A Follow-Up of Children At-Risk For Developmental Disabilities and Their Families Presenters: Dr. Hillel Goelman, Dr. Jill Houbé, Mari Pighini, Dr. Anne.

A Follow-Up of Children At-Risk For Developmental Disabilities and Their

Families

Presenters: Dr. Hillel Goelman, Dr. Jill Houbé, Mari Pighini, Dr. Anne Synnes

Dr. Hillel Goelman, Dr. Anne Synnes, Dr. Jill Houbé,

Dr. Anne Klassen, Mari Pighini, Dr Sarka Lisonkova, Zhen Li

The Human Early Learning Partnership

The University of British Columbia

Children and Women’s Health Centre of British Columbia

Mc Master University

Dana Brynelsen, Provincial Advisor.

The Infant Development Program of British Columbia

The Early Years Conference 2008: Valuing All ChildrenThe Early Years Conference 2008: Valuing All Children

Vancouver, BC, February 1st, 2008

Outline for Today’s Presentation:

I. An Interdisciplinary Study of the Trajectories of At-Risk Infants and Children

1. Background: What do we know about the development at risk children from the research in:

• Neonatology (Dr. Anne Synnes)• Early child development (Dr. Hillel Goelman)• Developmental pediatrics (Dr. Jill Houbé)• Quality of life studies (Dr. Anne Klassen)• Rationale for study (Dr. Hillel Goelman)

2. The early years: Background on early child development/Research challenges

Outline for Today’s Presentation (2)

3. Objectives of study

4. Research questions

5. Phases of the study

• Phase 1: Finding the children

• Finding children in databases: BCLHD, Edudata Canada

• Preliminary findings on health service utilization of non risk vs. at-risk children

• Phase 2: Linking health and educational information of at-risk infants and children (1996/7 Birth cohort)

• The role of the Population Health and Learning Observatory (PHLO)

Outline for Today’s Presentation (3)

• Phase 3: (a) Linking health and educational information of at-risk infants and children (1997 Birth cohort until present) (b) Identifying and linking information of special subgroups of at-risk children

• Cases Studies of Children and Families in the Infant Development Program of BC (Mari Pighini)

6. Concluding thoughts

1. Background(a) At-Risk children

(Anne Synnes)

“At risk children” are those, who as a result of medical, biological or environmental factors are more likely than typical children to have developmental delays and school difficulties

Level II and III regional neonatal-perinatal centers (NICUs) provide care for high risk pregnancies & intensive care for severely ill infants.

Babies born in BC with extremely low birth weight (ELBW, under 801 grams), are followed by the provincial Neonatal Follow-up Programme at the Women’s and Children’s Health Centre of BC.

Children treated in Neonatal Intensive Care Units (NICUS) are at riskat risk for developmental problems because of:

o anomalies they are born witho complications of treatments required in the newborn period

o effects of their newborn condition on their family/environment and/or concomitant risk factors

Background continued( b ) Health Related Quality of

Life (Anne Klassen)

Definitions of HRQL vary, but most view HRQL as being….•Subjective -- assessed from the patient’s perspective whenever possible

•Multidimensional -- e.g., the WHO’s definition of health, which is “a state of complete physical, mental, and social well-being and not merely the absence of disease

Definitions of HRQL vary, but most view HRQL as being

•Subjective -- assessed from the patient’s perspective whenever possible

•Multidimensional -- e.g., the WHO’s definition of health, which is “a state of complete physical, mental, and social well-being and not merely the absence of disease

2. The Early Years : Challenges to studying the developmental

trajectories of at-risk children (1)Hillel Goelman, Jill Houbé

• The early years are critical for children’s physical, cognitive, language, social and emotional development.

• Pre-term and other at-risk babies admitted in the NICUs are at risk for neurodevelopmental, behavioral and social dysfunction

•There is a dearth of:

interdisciplinary research to provide the multiple perspectives needed to fully understand the child’s development across various domains of development

“ecologically valid” research on the social determinants of optimal child development

•Clyde Hertzman: “What differences make a difference?” (or maybe Gertrude Stein).

• There are few population-based studies of preterm infant outcomes that permit interpretation of the impact of environmental factors/multiple determinants of long-term outcomes (family, community and health policy)

• Limited number of population based longitudinal research on at-risk children who are NICU survivors is also due to many methodological challenges.

•Neonatal Follow-Up Clinics provide multidisciplinary diagnostic services for former preterm infants

• Community intervention services provide on-going support for children and families

• Almost all intervention services terminate upon school entry

• Education policy, budgets and staffing prohibit on-going provision of remedial services to all but the most disabled school-age former preterm infants

The challenges to studying the developmental trajectories of these

children (2)

• Data collected on these children in BC are stored in (at least) different databases and in different formats:

The BC Health Linked Database (BCHLD) Neonatal Follow-up Programme (NFUP) at BC Children’s

Hospital Edudata Canada

• There is currently no systematic way of tracking the development of any of these children from their treatment in the NICUs through to school entry at age 5.

There have been no previous attempts to link the children’s health records in their early childhood to their later school performance

When at risk infants reach school age• Research has shown:

Approx. 50% of extremely low birth weight children have a learning disability (Walther, den Ouden & Verloove-Vanhorick, 2000; Wolke & Meyer, 1999) but it is less clear how “bigger” low birth weight children do

behavioural difficulties are “common” but little is known how this affects school performance (Whitfield, Grunau & Holsti, 1997)

• Early identification/ intervention of at-risk children can have a significant positive effects upon the children’s development (Goelman et al, 2005)

3. Objectives of the study

• To better understand the health and developmental trajectories of a population of at-risk children from birth to age 9

• To better understand the social determinants that impact on the developmental health trajectories of a population of at-risk children from birth to age 9 and

• To conduct an interdisciplinary study of a population of at-risk infants that draws on the strengths and complementary perspectives of psychology, neonatology, and developmental pediatrics and population health

4. Research Questions:

In comparing a cohort of at-risk children admitted to Level II/III NICUs with a matched comparison group of non-risk children:

1) What differences are there in the medical histories of the two cohorts?

2) What differences are there in the educational progress of the two cohorts in their elementary school years in such areas as:

a) Receiving learning assistance servicesb) Scores on standardized outcome measures

5. Phases of Study

Phase 1

To identify at-risk infants born in BC in 1996/7 admitted to the BC Level II/III NICUs (Cohort 1) and a matched comparison group (Cohort 2) of non-risk infants born in BC in 1996/7 through the BC Linked Health Data Base (BCLHD).

What data on these children are there in the BCLHD?

• How many at-risk children were admitted to the Level II/III Neonatal Intensive Care Units in B.C.,

• The reasons for their referral, and

• The history of their medical treatments, intervention and assessments

• Data on medical services that have been billed to and paid for by provincial health insurance

• Fields include visits to physicians (e.g., chronic illnesses), hospitalizations and surgeries and Interventions, therapies (e.g., physiotherapy, speech and language therapy)

• Preliminary findings, Preliminary findings, 2007 - 20082007 - 2008

• Some examples of the type of information being currently examined

What are some of the diagnoses identified through these analyses?

Adobe Designer

Percentage of non-NICU children vs. NICU Level II and NICU Level III children with more than 2 hospital re-admissions in the first year of life

Mean days spent in hospital: Non-NICU <4 days; NICU Level II, 8 – 24days; NICU Level III, up to 40+ days (Jan 2008)

Adobe Designer

Percentage of non-NICU children vs. NICU Level II and NICU Level III children with more than 2 hospital re-admissions in the 2nd year of life

Adobe Designer

Percentage of non-NICU children vs. NICU Level II and NICU Level III children with more than 2 hospital re-admissions in the 3rd year of life

Preliminary findings (2): September 2007-January 2008

o Updated reports on:

•An overall “population” view: Who are these children? Where do they live? Where do they go to get their medical care?

• Look at all the at-risk children admitted to NICU’s –not only the VLBW or ELBW– Identify whether services are hospital vs ambulatory based,

where children live (urban vs rural locations)

•Overview of clinical, hospitalization and other medical and non-medical interventions between birth and age 9 years old

Comparing health and service utilization trends in at-risk vs. non-risk children in BC

Some examples of the type of data that is currently being analysed include…

Table 1(a). Mean birth weight (BW) and gestational age (GA) of at risk infants in the study cohort when compared with non-risk children-Urban

URBAN

Non-Risk At-Risk Infants – Time in NICU

Level II, >= 24 hours Level II, >48 hours Level III, >= 24 hours Level III, >48 hours

Gender M F T M F T M F T M F T M F T

Number 28407 27157 55564 2413 1931 4344 1403 1119 2522 432 339 771 150 125 275

Per cent 51.1 48.9 100 55.5 44.5 100 55.6 44.4 100 56.0 44.0 100 54.5 45.5 100

Outborn (n=)

N/A N/A N/A 1122 901 2023 688 550 1238 0.00 0.00 0.00 0.00 0.00 0.00

Outborn (%)

N/A N/A N/A 34.97 2733 61.4 27.29 22.12 49.1 0.00 0.00 0.00 0.00 0.00 0.00

(N) GA 55501 4344 2515 771 275

Mean gestational age (GA) (weeks)

39.25 39.3 39.28 37.48 37.55 37.51 36.68 36.01 36.69 35.5 35.15 35.35 35.24 32.64 32.59

(N) BW (Hosp)

55501 4344 2522 771 275

Mean birth weight (BW) (grams) Hosp.

3507.20 3363.43

3446.7 3071.24

2972.97

3027.56

2883.34

2770.01

2833.06

2645.95

2476.52

2571.45

2015.42

1958.79

1998.68

Table 1(b).Mean birth weight (BW) and gestational age (GA) of at risk infants in the study cohort when compared with non-risk children-Rural

RURAL

Non-Risk At-Risk Infants – Time in NICU

Level II, >= 24 hours Level II, >48 hours Level III, >= 24 hours Level III, >48 hours

Gender M F T M F T M F T M F T M F T

Number

4751 4626 9377 188 159 347 119 102 221 43 31 74 19 15 34

Per cent

50.66

49.3 100 54.2 45.8 100 53.8 46.2 100 58.81 41.9 100 55.9 44.1 100[

Outborn (n=)

N/A N/A N/A 185 158 343 141 122 263 .00 .00 .00 .00 .00 .00

Outborn (%)

N/A N/A N/A 33.27 27.97

61.24 33.03 28.37

61.4 .00 .00 .00 .00 .00 .00

(n=) for GA

4733 4611 9344 187 159 346 117 101 219 43 31 74 19 15 34

Mean gestational age (GA) (weeks)

39.42

39.43-

39.42 36.90 37.19

37.0 35.96 36.40

36.16

34.23 33.81 34.05 33.21 30.80

32.15

(N=) fo[ BW (hosp)

4733 4611 9344 171 145 316 118 101 220 43 31 74 19 15 34

Mean birth weight (BW) (gram) H

3551.01

3476.19

3492.60

3082.69

2932.12

3013.50

2846.42

2717.75

2786.76

2452.4 2315.0

2394.84

2170.47 1710.27

1961.82

Phase 2

To link the health information on Cohort 1 and Cohort 2 obtained through the BCHLD in Phase I with their respective educational outcome measures in Grade 4 through Edudata Canada.

Edudata Canada is a database which includes information on children in the public school system starting when the child enters kindergarten, usually at age 5.

Linking the databases: Edudata Canada

•Edudata Canada includes information on the child’s developmental and academic progress, as well as demographics information, for example: In Phase 2, these children’s anonymized Personal Health Numbers (PHNs) will be linked with their Permanent Education Numbers (PENs).

• This will enable us to obtain and compare anonymous and confidential records of educational achievement and status (for example, standardized test scores i.e., FSA scores; special education designation and school support services, i.e., the student being assigned with a special support worker, among others

The BC Linked Health Database

The Edudata Database

The crosswalk linking the two data bases

What are some answers we can find from BCHLD /Edudata

Canada crosswalk? The crosswalk will enable us to:

• Link neonatal medical information on a given child with information on that child’s school performance on standardized assessment measures in Grade 4, i.e., the Foundations Skills Assessment or FSA.

•Inferential and predictive statistical techniques will be used to identify the relative weight contributed by different social, economic, health and developmental variables to the school outcome variables from Edudata Canada

Phase 3

To identify and to link health information on

specific sub-groups of at-risk children in

BC who were admitted to the BC Level

II/III NICUs and matched comparison

groups.

Population-based study informed by case

studies:

“Case Studies of the Infants and Children Case Studies of the Infants and Children in the IDP of BC ~ Preliminary findings”in the IDP of BC ~ Preliminary findings”

Background

•Absence of systematic data gathering in early childhood development -- this creates a gap in ability to conduct longitudinal research for children who are developmentally at risk.

•The IDP Programs have collected invaluable medical, developmental and family information on more than 40 000 children in British Columbia since 1975 (Brynelsen, 2003).

•Information: entered manually and stored in different files until recently

•Currently: Key information is being entered under a Central Registry database (e.g. fields like “date of intake,” “reason for referral”)

•Academic and community partnership: First time for IDP to participate in a study of this kind

Collaborative partnership study

~ guided and inspired by:1. Discussions with an IDP Program Coordinator; IDP

consultants, and with the IDP Provincial Advisor;

2. Informal discussions with a few parents: “Tell us about your experience with IDP”; used the IDP Post Service Evaluation Questionnaire

3. These statements:

” … how help is provided matters as much, if not more, than what is done if positive consequences are to be realized…”(Karuza, Rabinowitz & Zevon, 1986), and“…in effective home-based, family-centred early intervention programs parents “complement” the intervention program instead of “supplementing

it…” (Mahoney et al, 1998)

Objectives of StudyObjectives of Study

This qualitative, retrospective case This qualitative, retrospective case study looks into the experiences of study looks into the experiences of

families with children who are at-risk families with children who are at-risk for/ identified with developmental for/ identified with developmental

disabilities from their child’s birth to disabilities from their child’s birth to their entry into schooltheir entry into school

1. FRAMING OF STUDYFRAMING OF STUDY◊Literature with previous research on and/or descriptions of…

•Children “at-risk” for “developmental disabilities,” children with “developmental delays,” and children who develop “typically”

(Synnes et al, 1994; Walther, den Ouden, & Verloove-Vanhorick, 2000)

•Early intervention programs – effectiveness of early intervention (Mahoney, 2003; McCollum, 2002)

•Special needs services and programs in British Columbia • Family centred programs• Therapy/Center focused programs

(Brynelsen, Cummings & Gonzales, 1993; Goelman et al, 2005)

•Academic-Community Collaboration/Partnerships(Goelman et al, 2005)

2. MEANING OF STUDYMEANING OF STUDY◊ Unique perspectives through the voices voices of parents (different tradition in literature concerning special needs)

◊ A first step in trying to “connect the dots” of children’s life paths, from the time of their birth and into to their school ages, within their individual family contexts.

Research Questions 1. What are some of the unique experiences of developmentally at-risk children and their families who participated in the IDP in terms of access to resources and programs?

2. What are some of the unique experiences of developmentally at-risk children and their families who participated in the IDP in terms of their child current developmental needs?

3. In what ways do the experiences described in a) and b) relate to the current preschool/school demands on these parents; to the demands from other family members, and to financial/work pressures?

Methods and Procedures

◊ Naturalistic qualitative research design; multiple case study approach: (Creswell, 1998, 2003); two stages

◊ Stage 1: Purposefully targeted sample of 12 participants of four families (8 parents, four children)

• Two mail-outs to 28 IDP families◊ Criteria for Inclusion for participant families comprised, among

others:

• Received IDP home visitation services for their children between the ages of zero to three years

• Expressed their wish to be re-contacted for research purposes during the discharge process ( “IDP Post Service Evaluation Questionnaire”)

◊ Two-step ethics approval for participation in study

Table 1. Table 1. Family DemographicsFamily Demographics

FamilyFamilyCompositionComposition

Children Children in in

participatiparticipatingng

familiesfamilies

AgeAgeof of

siblinsiblingsgs

LanguagLanguagesesspokenspokenat homeat homeby by parent(sparent(s))

Parent'sParent'sLevel ofLevel ofEducationEducation

Parent's Parent's Employment Employment StatusStatus

Families

F M

# ofchildre

n # Age E.

Other

H. S

Post

Sec. F M

0001 Y Y 2 1 7 yrs; 10

mos.

10 year

s

Y N Y (F, M)

full-time

part-time

0002

Y Y 1 1 6 yrs; 9

mos. N/A

Y Y Y (F,M)

full- time

full-time

0003 Y Y 2 1 4 yrs; 8

mos

6 year

s

Y YY

(M)Y

(F)

home-busines

s

self-employe

d

0004 Y Y 2 1 2 yrs; 10

mos.

7 year

s

Y Y Y (F, M)

part time

part time

◊All two- parent families with high-school/post-secondary education ◊ At least one parent per family employed/self-employed –no

income assistance ◊ Three families also spoke another language ◊ 0002 child had no siblings

Data collection

1. Reviews of children’s files conducted at IDP Program site

• No personal names and/or identifiers included2. Three to four 45 minutes open ended individual interviews

- digitally recorded

• Final individual session with participating parents revising information from reviewed files

3. Two focus groups (before and after interviews)

• Only parents participated in interviews and focus groups

4. Transcriptions: combination of verbatim and summaries (Quinn-Patton, 1999)

5. Post-data collection: Member-check in sessions to ensure integrity of transcribed interviews

Table 2. Table 2. Interview of Parent Participation in the Interview of Parent Participation in the Focus Groups, Interview Sessions and File Revision Focus Groups, Interview Sessions and File Revision SessionsSessions**

Families

Focus Focus GroupGroup

11

Interview Interview Session 1Session 1

Interview Interview Session 2Session 2

Interview Interview Session 3Session 3

Interview Interview Session 4Session 4

File File ReviewsReviewsSessionSession

Focus Focus GroupGroup

22

00010001 X M M M M M F

00020002 M M M M M M M 

00030003 M M M M M M M  

00040004 X M FM FM N/A M X *F=Father; M= Mother; X= no attendance/participation; N/A=

no session

◊ Only one family had both parents participating throughout interviews◊ Focus groups attendance was limited due to unforeseen circumstances◊ Focus Group 1 questions introduced before Interview 1 for 0002/0004

Data AnalysisData Analysis

◊ Data sources:Data sources: File reviews; digitally recorded and transcribed interviews, focus groups, memos

◊ Mostly thematicMostly thematic content analysiscontent analysis to interpret the identified themes (Krippendorf, 2004)

◊ Ensuring integrity of study, integrity of study, through rigorous three-step process of::

1. Inter-coded reliability with 90% + agreement; inter-coding disagreement was reported and alternatives presented

2. Inter-coder audibility -- until themes, categories and subcategories established (Use of NVIVO software)

3. Second set of member-checks with participants confirming their agreement with identified themes and categories

Preliminary Findings: File Preliminary Findings: File ReviewsReviews

~ ~ Information FieldsInformation FieldsReferral source

Identified condition

Medical history

IDP intake

Wait time

Developmental status

IDP home visitation (frequency)

Therapy/ies

Other Programs (accessed)

Other Referrals

Other Services (provided)

Assessment

Transition

Discharge

Excerpts: Consultant’s comments

Family feedback:

Artifacts

Summary of Researchers’ Summary of Researchers’ Perceptions of Family ProfilesPerceptions of Family Profiles

““Memos” added to information fields re:Memos” added to information fields re:◊ Family profile (memo)Family profile (memo)◊ Level of family involvement with program, e.g. Level of family involvement with program, e.g.

family 0001: family 0001:

◊ Responses to reviewsResponses to reviews◊ Unique connections between families and Unique connections between families and

consultants, consultants, e.g., comments, artifacts, letters◊ Memo summarizing

characteristics of consultant/-family contact and relationship:

Overwhelming number of medical-related information … 3 specialists; in-depth… assessment process: …screening and formal assessments. Complex process of referrals/ gathering documents for different programs & agencies –t… all in place; successful referrals/intakes

Overwhelming number of medical-related information … 3 specialists; in-depth… assessment process: …screening and formal assessments. Complex process of referrals/ gathering documents for different programs & agencies –t… all in place; successful referrals/intakes

•Family regularly involved with IDP Family regularly involved with IDP consultant and Physiotherapy servicesconsultant and Physiotherapy services ( once every 3-4 weeks)

•Family regularly involved with IDP Family regularly involved with IDP consultant and Physiotherapy servicesconsultant and Physiotherapy services ( once every 3-4 weeks)

Preliminary Findings, Stage 1: File Reviews ~ Across families

◊ Age of referralreferral to the IDP: by 6 months

◊ Referral sourcessources: Pediatrician (2), Community Health Nurse (2)

◊ Wait-timesWait-times before intake: under four months

◊ Home visitsHome visits: monthly (IDP consultant, IDP physiotherapy consultant or both.

◊ Medical/developmental diagnosis by year 1; diagnosis by year 1; ddevelopmental delays:delays: Moderate to severe level of intensity (All)

◊ Ongoing medical surveillance surveillance by a pediatrician (All)

◊ Additional complicationscomplications or conditionsconditions - specialistsspecialists, physio-, occupational, speech-language therapiststherapists (All)

◊ Other programsprograms, e.g., Parent-Child Mother Goose (3)

◊ Designation:Designation: “special needs” designation by age three (special funding funding for support) (All)

◊ ReferralsReferrals to: “Therapy” program; “3-12” Program after their discharge (3)

◊ TransitionTransition into an inclusive preschool/daycare setting (age 3)

◊ Family childcare support (1)

Preliminary Conclusions Preliminary Conclusions Themes emerged through coded categories Themes emerged through coded categories

/subcategories/subcategories

Interviews-Topic 1: Early experiences

““What are things you recall…e.g. at the time your child What are things you recall…e.g. at the time your child was referred to the IDP?was referred to the IDP?

•Early memories and experiencesEarly memories and experiences are difficult to recall – time span, emotional

•Importance of referral referral to IDP – the value of home visitation, within a family family centred modelcentred model “comfort”, “flexible”, “safe”; the value of the informationinformation, access/availability access/availability of resources; consultantconsultant as an ally and an advocate for other referrals and services

Preliminary Conclusions Preliminary Conclusions Themes emerged through coded categories Themes emerged through coded categories

/subcategories/subcategories

Interviews-Topics 2 & 3:

What were your experiences during each What were your experiences during each transition (to Preschool, to School )transition (to Preschool, to School )

•Changing needsChanging needs: As children grow and develop their disability remains, but the special needs change

•Awareness of Special Needs:Awareness of Special Needs: Child grows but does not become independent, parent MUST grow stronger, more, independent --an advocate

•Multiple Roles:Multiple Roles: Perception he/she has to become Case Manager—on top of their family duties—as service providers move towards an agency-focused, therapy centred approach

Preliminary Conclusions Preliminary Conclusions Themes emerged through coded categories Themes emerged through coded categories

/subcategories/subcategories cont. (2)

Interviews -Topic 4:

How did you and your family cope How did you and your family cope with transitions and change?with transitions and change?

•Stressors Stressors were mainly job related and financialjob related and financial and juggling with family logisticsfamily logistics

•Extended family/community networknetwork support was key•Role of IDP consultantRole of IDP consultant: Central case manager

providing help for access to programs and services; empoweringempowering parents: supporting parents to become advocates; providing information/knowledge information/knowledge translationtranslation to understand child’s needs and to understand systemsystem

Follow up: What are some of the most relevant issues for parents

CCommon themes through interview topics, and across ommon themes through interview topics, and across themes & categoriesthemes & categories::

1.1. Home based, family centred model Home based, family centred model appears to be preferred one – in contrast to centre-based and exclusively therapy and child focused

• RelationshipRelationship with consultant in home based services is a key feature for parents; e.g., Frequently coded terms that reflect participants’ valuesvalues: (quotes) “trust”, “feeling comfortable”, and “friendship”, “wonderful”…

• InclusionInclusion and participation of siblingsparticipation of siblings in home-visits and therapies are highly valued. Example of quote “… siblings are teachers too”

Follow up…(contd..)

2.2. TransitionsTransitions from IDP to other centre-based programs appear to be hard on parents;

e.g. (quote) “Feeling you have been dropped” and “Wanting to be ‘hand held’ until the school years”

– Parents suggest: a chart showing how systemsystem and services work

3. Hardest transition: from preschool to school• Lack of centralized case managementcase management;

shortage of resources;resources; insufficient contact with teachers/administrators

• Key contact person: School Support Worker

Themes within participant families…

1. Values and belief: protecting the public health/education systems• Conflicts of interest: shortage of resources or difficulty

matching professionals with child/family’s unique needs –hiring private practitioner (family 0001)

2. The value of network and support• Learning the difference of their child’s growth and

development through the experiences and stories shared by other families re anticipating needs and resources (e.g. requiring a w (family 0002) wheelchair; different type of child minding arrangements)

3. The need to ally, to search for answers and to advocate• Recognizing that there is a “fight” to be fought every step

of the way and that families need allies to overcome major barriers (family 0003)

4. Inclusion of all members above all• Listening to the needs of the family to have all members

participate in each process and decision, recognizing their lifestyle and validating their complex needs –more valuable than any measurable (developmental) progress (family 0004)

Stage 2: Update Method and Procedures in Multiple Case Study

(Winter 2007-2008)

Rationale:Rationale: Gilliam, Meisels & Mayes (2005): The need for screening and surveillance for children who are “at-risk” for developmental disabilities, who do not have identifiable special needs by age 3; but who exhibit indicators of specific learning, behavioural, social-emotional, motor difficulties between ages 3 – 5 and who required some kind of special assistance in the Elementary years.

Stage 2: Update Method and Procedures in Multiple Case Study (Winter 2007-2008, cont.)

Purpose:Purpose: To present a more comprehensive portrayal of the experiences of families receiving early intervention support in B.C.:

•Participants: Participants: Targeted sample of two to three familiesTargeted sample of two to three families

•Representing families with children in the “grey area”

•Children identified as “at-risk” for developmental delays shortly after birth (e.g. premature, very low-birth weight (< 1500 gr.)

•Followed by the IDP of BC in the “monitoring” level of services (as opposed to home visitation) --discharged by age e.g. “Child caught up to norm”

•Recruitment, Procedures, Data Collection and Proposed Recruitment, Procedures, Data Collection and Proposed Data Analyses: Data Analyses: Similar to Stage 1

•Timeline:Timeline: Study completion anticipated for August 2008

6. Concluding Thoughts

•Significance of studies

•Anticipated outcomes and benefits•Theory to Practice: The Social Inclusion for At-Risk Children and Families Project (SDPP)

* List of References available upon request*

Two studies: 1. A series of case studies of the children and families of the IDP of BC, and, 2. A population-based study that will link the health and developmental trajectories of at- risk children

““Social Inclusion for At-Risk Children and Their Families”Social Inclusion for At-Risk Children and Their Families” Linking research to practice, to families and communities

Social Development Partnership Program, Social Development CanadaA partnership between IDP of BC, The CHILD Project and HELP

A two-fold project set in BC’s Lower Mainland targeting the most vulnerable children and families –those who experience social exclusion in both “mainstream” and “special needs” contexts.

11. . Case Studies of the Infants and Families of the Infant Development Program of BC or (IDP Case Study): 1.1.Parents are expressing the need of a family-centred,

continuous, seamless system of early intervention services between birth and the early school years (K – 1)

1.2. Services should include screening, diagnostic and referral programs for at-risk children and their families22. . An Interdisciplinary Study of the Trajectories of At-Risk Infants and Children or “NICU”study:

2.1. At-risk children who were admitted to Level II/II NICU’s in BC continue to require additional medical attention over time, when compared to non-risk children (not admitted to NICU LevelII/III)

Poster template: Angela Jaramillo, The CHILD Project Poster design: Lara El Khatib and Mari Pighini, SDPP, HELPIn consultation with Ellen Larcombe, GIS, HELP

To provideprovide… …the parents of developmentally at- risk

infants and young children with information to better understand and address their concerns regarding their children’s developmental needs

… a model for a seamless continuum of services for at risk children and their families

…parents and professionals with centralized online and printed information about resources, as well as training (including online courses)

…service providers with key information to support them in better serving the children and families they work with

Deliverables follow Bronfenbrenner’s ecological framework (Bronfenbrenner 1976, 1989). Tools/ (questionnaires) organized as follows: A micro system level addressing concerns about children’s developmentMeso and exo system levels addressing the identification of barriers to social inclusion of at risk children and their families

Online/printed lists of resources addressing child development

concerns for parents and professionals, to be accessed by geographic area or developmental domain

SDPP TEAM: Hillel Goelman, Ph.D.,SDPP Project Director ◊ ◊ Clyde Hertzman, Ph.D, Director, HELP ◊ ◊ Dana Brynelsen, Provincial Advisor, IDP of BC ◊◊ Lara El-Khatib, Ph.D.,SDPP Project Coordinator, HELP ◊ ◊ Mari Pighini, Ph.D. Cand., SDPP, Research Coordinator, HELP ◊ ◊ Ginny Chu, SDPP Project Assistant, HELP

WHAT IS THE SDPP PROJECT?WHAT IS THE SDPP PROJECT?

Research Component

DESCRIPTION OF PROJECTDESCRIPTION OF PROJECT

PROJECT OBJECTIVESPROJECT OBJECTIVES

1. Information about resources and tools for parents and service providers in the Lower Mainland, and, 2. Training and dissemination of information

Building community capacity and knowledge creation and dissemination, through a research and a deliverables component.

PROJECT GOALPROJECT GOAL

111

2

22

33

Deliverables Component

44 DELIVERABLES COMPONENT:DELIVERABLES COMPONENT:

55

September-October 2007September-October 2007 Search/ review online resources for parents,

professionals and

community service providers

Develop a list

of relevant community

agencies and professionals Develop

questionnaires addressing

concerns about young

children’s development

November-December 2007November-December 2007 Hold focus

groups with parents and professionals for input and feedback

Handouts and posters available throughout communities in BC’s Lower Mainland; e.g., local libraries, grocery stores, community centers/neighbourhood houses, day care centers, preschools and schools, among other places

January-February 2008January-February 2008 Further updating and dissemination of online tools and resources

Introduction of online courses and TV/video production

Design and production of the training and information dissemination component

March-April 2008March-April 2008 Project wrap-up

Project follow-up

Presentations/publication executive summaries

Proposal to expand project throughout BC

TimelineTimeline

RESEARCH COMPONENT: : PRELIMINARY FINDINGS 55

66

At The University of British Columbia

Thank you!Thank you! [email protected]

[email protected]

[email protected]@cw.bc.ca

Questions? Comments? Questions? Comments? FeedbackFeedback??